Continuing our series of posts, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families.

Today, Giovanna Abbiatiof the Maruzza Foundation, Rome, Italy, explains the background to the Trieste Charter and its purpose in safeguarding the rights of children who are nearing the end of their lives.

‘The crazy hour’ – drawing by a six-year-old girl: “ I wish to stop the time, I wish it never became night, I want to play more.”

The Trieste Charter – The Charter of the Rights of the

Dying Child project – was launched in 2012 by a multidisciplinary team of paediatric and palliative care experts with the intent of safeguarding the rights of children nearing the end of their lives. Numerous international organisations have already endorsed the Trieste Charter. It is our objective to encourage its diffusion as widely as possible so that everyone caring for a dying child is capable of staying near and providing support that ensures both respect and dignity until the last moment of the child’s life.

The human rights principles, on which the Trieste Charter is based, pertain to all individuals and were originally outlined in two historic documents ratified by the United Nations: The Universal Declaration of Human Rights (1948) and The Declaration of the Rights of the Child (1989). These two documents, along with other subsequent human rights bills, have been adopted by most countries around the world.

So what does the Trieste Charter add to these declarations?

As Prof Marcello Orzalesi, editor of the Charter, explains:

“Although many international and national human rights bills declare the right to health and protection for all children, unfortunately, in numerous circumstances and for various reasons, these rights are not always respected. This is particularly so when a child is dying.”

The originator of the project, Dr Franca Benini, says:

“The profound emotional involvement and burden on the family and caregivers created by this situation can trigger inappropriate reactions and behaviour that, often unintentionally, preclude the child’s rights. Sometimes, the people closest to the child refuse the negative progression of the disease and, consequently, do not recognise terminal illness and death as real and imminent issues to be addressed. As a result, these children are the subject of unrealistic decisions and inappropriate treatment choices.”

And so the Trieste Charter, supported by the Maruzza Foundation, was devised, to reiterate the centrality of the child’s rights within this context. It is not simply a list of rules translated into legal principles but is a series of considerations, recommendations and care solutions appropriate for the dying child and his/her family that can be applied in any clinical or environmental setting.

Silvia Lefebvre D’Ovidio, Leader of the Maruzza Foundation, and Matteo

Silvia Lefebvre D’Ovidio, Leader of the Maruzza Foundation, says:“The Trieste Charter reminds us that the dying child’s needs and best interest should be the primary focus of care, that children should be active participants in decisions affecting them, their wishes heard and taken into consideration.”

Dublin, Moscow and Buenos Aires are some of the cities that have recently welcomed the Charter as a ‘Guest of Honour’. You can now read, download and share the Charter in three different languages: English, Spanish and Portuguese.